Date: 01/27/2014

The power of art and advocacy

Last month, we had the great pleasure of meeting Rick Guidotti, award-winning former fashion photographer turned "difference" activist, and founder and director of the education and advocacy organization, Positive Exposure.

Rick Guidotti

We met Rick at his studio in downtown Manhattan. And although in this very same space he had photographed many “celebrity” models in the 80’s and 90’s, for a variety of high-profile clients including Yves St. Laurent, Revlon, L’Oreal, Elle, Harper’s Bazaar, and GQ—now this quiet studio, accessorized by perfect photos of the “imperfect” and drenched in the warmth of the sun and a friendly dog named Buster, seemed as far away from the glitzy world of high-fashion as one could be.

In his former career, Rick took photographs of what were considered “the world’s most beautiful people;” chic, striking images used in publications all over the world. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything—he not only redefined his life’s path, but redefined the meaning of beauty.

Rick had been feeling disillusioned by the high-fashion industry and in this moment of serendipity, he walked by a young woman with albinism (a genetic condition that results in loss of pigmentation in the hair and eyes) at a New York City bus stop. He found her to be breathtaking, and wondered why she wasn’t considered beautiful in his other world.

Upon returning home Rick began a process of discovery— about albinism, about people with genetic differences, and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.

He could not disagree more.

This exploration resulted in a show-stopping magazine spread for Life Magazine featuring young women with albinism smiling out from under the headline “Redefining Beauty” —Rick Guidotti, photographer.

But his mission didn’t stop there.  In fact it had only begun.  

His foundation called Positive Exposure, an innovative arts, education and advocacy organization, working with individuals living with genetic, physical, cognitive, and behavioral difference, was soon born.

He began by working with the albino community and taking photos that would “give people the permission to see beauty and interpret beauty in their own right.  Not to see beauty that is dictated by industry’s ideas of what is acceptable.”  What started with photographs of one “rare” community, has grown into a wide variety of programs created to empower people living with a variety of behavioral, genetic, physical and cognitive differences—and to educate the world around them.

In fact, for 15 years now, Rick has been photographing people with genetic differences, redefining beauty, and introducing the world to an entirely new movement: the human movement.  

Likely, he has told his “Positive Exposure” story a thousand times.  But on this day, judging his palpable enthusiasm, one might have thought he had just opened the doors…that morning!   “I still tried to keep up with the commercial work for about six years after Positive Exposure began, but I was feeling much more connected to this life, this cause. And it made so much more sense for me,” he explained.

Marc Benedetto

Another defining moment occurred for Rick after photographing a girl in the UK with albinism. She told him that through the experience she realized that hatred and abuse will never disappear, but the hatred and abuse she felt for herself had gone away. From that moment forward, Positive Exposure became his life. He stopped working in the fashion industry and completely dedicated his time and life to his not-for-profit foundation.

Now, Rick spends most of his days photographing members of the genetic, physical, cognitive, and behavioral difference community, giving self-esteem workshops, lecturing to medical students, parent groups and conferences, corporations, nursing and genetic counseling programs, universities, and elementary schools worldwide. His lectures, focused on the motto of Positive Exposure: CHANGE HOW YOU SEE. SEE HOW YOU CHANGE. SEE WHO YOU CHANGE, are delivered with such resonance, such passion, they are often punctuated by standing ovations. His message, a continuous drum beat throughout his presentation, is: individuals living with a genetic difference are first and foremost human beings.

During a recent lecture at the School of Osteopathic Medicine in Philadelphia, Rick said, “We have to challenge stigma and we can use the visual arts to do it.  We are all empowered by the vision of being incredible, vital, accepted, and embraced. These people in these communities are no different. They are not specimens to be studied. They are wonderful, they are gorgeous. Look at them!”

Denise and Marc Benedetto

Rick also has a unique knack for doing the impossible— connecting deeply with teenagers. FIRST member Marc Benedetto (affected with lamellar ichthyosis) and his mom, Denise, had joined us as Rick’s studio for the afternoon. Within minutes of his arrival, it was clear—any self-consciousness Marc may have been feeling had leaped out the window of the 6th floor loft, alongside any reservations he may have had of being photographed by a former “fashion photographer.”  Marc was excited to share the stories of his life, his plans for the future, and his newly found appreciation for self-advocacy. 

“Just being here today, you are your own advocate. That’s fantastic,” Rick told him.

A new passion of Rick’s, The PEARLS Project, is a brain child of Positive Exposure that inspires students to be ambassadors for their differences. They are encouraged to share real life stories, their interests, their hopes—everyday thoughts, expressed in online blogs about life from their perspective. They are asked to share these stories with their peers. The hope is that the PEARLS Project creates the opportunity for their “differences” to become every day language. These kids are seen as everyday people; to become the norm; to be human—and not represent the fringe of society, the “unusual and unknown”.

Rick is also the subject of a documentary of the unflinching new film On Beauty, directed by Joanna Rudnick (In the Family). And, his photographic exhibition, Positive Exposure; The Spirit of Difference, premiered at the People’s Genome Celebration in June 2001, at the Smithsonian’s National Museum of Natural History in Washington, DC. Positive Exposure: The Spirit of Difference continues to exhibit in galleries, museums, and public arenas internationally.


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